A Deadly Specter

After 12 hours in a busy emergency room, Peter, the intern I was relieving, looked exhausted. His busy day shift had ended and it was time for me to take over. As we walked past each patient’s room, Peter delivered a one-sentence summary. Room two, 22-year-old with appendicitis, surgery has seen her, OR booked. Room three, 85-year-old nursing home resident, fever for two days, chest films need to be checked, urine looks clear. Peter paused outside the room of his most recent arrival. Room one, 32- year-old Haitian, took some witch doctor medicine, is complaining that he has no feeling in half of his body. Psychiatry has been called. Good night. And with that, Peter headed for home.

I walked in to evaluate Henry Pierre, the patient in room one. When I had arrived for my shift, the paramedics who brought Henry in had told me his story. He had been fine when he sat down to dinner with his girlfriend. But in the midst of the meal, he had become violent for no reason and she had called an ambulance. The EMS crew had matter-of-factly described finding Henry thrashing about on the floor, cursing and sweaty. It had taken two sturdy paramedics and two even sturdier Boston police officers to wrestle Henry off the floor and into the ambulance. Naturally, I was a little wary.

Is Mr. Pierre restrained? I asked a nurse.

Oh yes, she replied. Four-point restraint--good enough for you?

I quickly calculated that only Houdini could escape from locked restraints on each limb faster than I could call for help. Comforted by this thought, I entered Henry’s room.

Henry lay in bed, smiling and calm. He certainly didn’t look violent, or even ill for that matter. I introduced myself and asked what had happened, fully expecting some strange story about people who were out to get him. His reply was even stranger. Henry had absolutely no recollection of his violent episode. He didn’t even remember how he got to the hospital. In fact, the last thing he remembered was eating dinner with his girlfriend. The way Henry was smiling reminded me of someone who has been hypnotized and can’t understand why his hand keeps rising every time the hypnotist says the magic word. He seemed to feel nervously amused at his situation. He knew where he was, and he answered all my questions as well as anyone might under those conditions.

So you won’t get violent again if I remove the restraints? I asked.

Henry’s smile grew even larger. How could I? he replied. I can’t move my right arm or leg.

When I tested his muscle strength, the left side of his body was normal, but there was no response--not even a twitch--in his right leg. And he could barely move his right arm. I decided to unfasten his restraints. After all, even if he did get violent, I reasoned that I could run faster on two legs than he could on one.

Henry told me that his right side had been getting weaker each day for the past week. In fact, he had had to stop driving his cab because his right leg was too weak to depress the accelerator. I then tested his ability to feel pain. When I pricked his left leg with a pin, he flinched. But when I tested his right side, I got no response. Though the pinpricks on his right leg had drawn a little blood, Henry couldn’t feel them.

If Henry had been psychotic when he arrived, he was quite rational now, and although psychiatric patients do strange things, his lack of sensation was too convincing to be feigned. Of course, his violent episode at home needed to be explained, but right now, I decided, Henry didn’t need a psychiatrist. He needed a radiologist.

I strongly suspected that something in Henry’s brain was causing his bizarre behavior and lack of sensation. Only after we were sure there was nothing structurally wrong with Henry’s brain could we pass his case on to the psychiatrists. When I called the psychiatrist covering the ER, she was happy to hear that she needn’t come down to see Henry. The radiologist on call, however, wasn’t too happy to hear that I needed an emergency CT scan of Henry’s brain.

While we waited for the radiologist to arrive, I got to know Henry a little better. He had arrived from Haiti 16 years earlier, and he had been working as a cabdriver ever since. He said he had been perfectly healthy until a week before, so healthy he had never even visited a doctor. Even when he noticed that his right arm and leg were weakening over the past few days, Henry had turned not to conventional medicine but to a voodoo belief system that I poorly understood. Growing up in Haiti, where African healing traditions are strong and trust in Western medicine is weak, Henry had always consulted a bocor when he was feeling ill. The bocor (the word is Creole for voodoo healer) would give him some medicine, and he would get better. Just the day before, Henry’s brother, who was a full-time bocor in a large Haitian community in New Jersey, had driven to Boston to treat Henry with some herbs he had mixed into wine.

I would later learn that it was this use of alternative medicine, together with Henry’s bizarre loss of feeling, that had prompted Peter to refer Henry to a psychiatrist. Many doctors, trained in a Western medical tradition in which scientific explanation reigns supreme, would have done the same. We find it difficult to accept other ways of understanding the world, and this difficulty is proportional to our ignorance. If Henry had merely prayed to a Judeo-Christian God or gone to confession, few physicians would have called the psychiatrist. But to many doctors, taking voodoo medicine for paralysis sounds crazy. Even in the multicultural climate of the nineties, such reactions are more common than we may care to imagine. Peter had assumed that Henry’s paralysis was a hysterical reaction of some sort and therefore assumed that a psychiatrist would be the best person to diagnose and treat the condition. It was an understandable, but nevertheless mistaken, assumption.

Henry’s CT scan showed two large masses--each over an inch square--on the left side of his brain. His condition was extremely serious. Such masses are caused by abscesses, tumors, or infections, and as they grow larger, they can produce an array of neurological symptoms. According to the radiologist, Henry’s CT results clearly pointed toward infection. When the brain is fighting an infection, the CT scans show dying tissue surrounded by a bright ring of inflamed living tissue crammed with immune cells battling the infection. The most likely cause of Henry’s infection was an intracellular parasite called Toxoplasma gondii.

More troubling than the infection itself, however, was that T. gondii is most likely to cause disease among people with a severely crippled immune system. People tend to get infected with the parasite through contact with contaminated cat feces or raw meat, but if their immune systems are strong enough to limit the spread of infection, they don’t show any signs of disease. The exception to this rule is the fetus. If a woman becomes infected while she is pregnant, the parasite can infect the fetus through the placenta, sometimes leading to severe complications and even death.

Henry had already told me he wasn’t taking any kind of medication or drug that would weaken his immune system. That meant some other pathogen was wiping out his immune system. In the vast majority of toxoplasmosis cases, that pathogen is HIV. Once HIV has overwhelmed the normal immune mechanisms that prevent the parasite from spreading, T. gondii tends to attack the brain. The infected brain tissue attracts immune cells, and the resulting inflammation and swelling can cause seizures and loss of sensation.

It was rare--but not impossible--for HIV to announce itself this way. But I was puzzled. From what Henry had told me, he had none of the most common risk factors for HIV infection. He didn’t use intravenous drugs, and he hadn’t had unprotected sex with an infected partner. Moreover, the symptoms of HIV infection tend to follow a common pattern. When a person first becomes infected, there is usually a mild flulike illness, followed some months or years later by the symptoms of AIDS--night sweats, weight loss, sinusitis, diarrhea, and coughing. Yet Henry told me he had been perfectly healthy until the numbness set in two days ago. Now I was assuming he had a massive brain infection because of suspected HIV infection. I had to find out if my suspicion was correct.

When I got to Henry’s room, I found him surrounded by several family members. Although I was uncomfortable talking about the CT scan results in their presence, no cajoling on my part could get them out of Henry’s small room.

Henry, the tests show us that you need to come into the hospital right away, I said carefully. You have something in your brain that may have caused both the weakness and your violent episode today.

Was this how you were supposed to break the news? Was I being sympathetic or totally missing the mark? I glanced over my shoulder at Henry’s relatives.

What does he have in his head? his sister asked.

Given the little information I had, I replied in the most general of terms. Well, it may be an abscess, or a growth like a tumor, or an infection.

Just then, Henry’s eyes began rolling to one side and his body began shaking violently. He was having another seizure. This time, instead of being restrained by lock and key, Henry was pinned down by his relatives, who were each hanging onto a limb and yelling in Creole. I tried to keep everybody calm, meanwhile frantically struggling to keep Henry’s arm still enough to inject an antiepileptic drug and a quick-acting tranquilizer. Needle finally hit vein and Henry dropped off into a deep sleep. He was wheeled out of the ER and out of my care. When he would awake several hours later, he would be in the care of a neurologist.

Though emergency room doctors are often gratified to be the first to diagnose and treat a disease, our contact with patients is often frustratingly brief. When I finally got a chance to look in on Henry in the neurology ward, he was smiling, just as he had been when we first met. Treatment with an antibiotic had cleared up his brain infection, and he had quickly regained the use of his right side. But my suspicion had been confirmed. Henry had taken the test for HIV, and the result was positive.

I thought back to my talk with Henry in the ER. I had somewhat naively thought that he would reveal to a complete stranger the intimate details of his personal life. Many of us have secrets that we find difficult to admit even to ourselves, let alone to others. The coping mechanisms that we use to deal with our problems are as complicated as the conditions they help us handle. While the ways people cope with the prospect of dying from a fatal disease have been well analyzed by psychiatrists, psychologists, social workers, and chaplains, the truth is that nobody ever plays it by the book. Most patients with a fatal disease deny it at first, then gradually come to accept their condition. But Henry, perhaps because of his underlying resistance to Western medicine, or perhaps because of the sheer psychological burden of living with the virus circulating within him, had never gotten past the initial stage of denial. When I later learned the painful truth about Henry and his disease, his reluctance to confide in me became more understandable.

After a few weeks in the hospital, Henry had finally told one of his doctors that his girlfriend was HIV positive. He said he had known this for many years but had chosen to ignore the risks that unprotected sexual relations with her would bring. Rather than accept the unacceptable, he had chosen to deny the very existence of the disease, and he lived his life as if nothing were wrong. But the existence of the virus was something no denying would ever change.

Perhaps the saddest part of Henry’s story was that he had already lost a two-year-old son to the disease. A year before, the toddler had died at another hospital of an overwhelming chest infection. A quick phone call to that hospital by Henry’s physician confirmed that the boy had died of Pneumocystis carinii pneumonia, a common and often fatal complication of HIV infection. The child had become infected with HIV while still in his mother’s womb. Although Henry acknowledged that his son had died, he claimed that the boy had died of bad pneumonia. The child had indeed died of pneumonia, but it was pneumonia caused by HIV infection. Henry’s denial was not limited to his own infection.

Henry spent three weeks in the hospital, and when he left, he had regained the complete use of his right arm and leg. He was able to drive his taxi again, which allowed him to provide for his girlfriend and their two other children. He reluctantly agreed to allow a hospital social worker to work with the family to ensure that the parents both stayed healthy for as long as possible.

A few months later I ran into Henry on his way to a checkup with his doctor. He said he was planning a trip back to Haiti for a vacation and a visit to the best bocor he could afford. That, he assured me, would eliminate the bad spirit--he never referred to HIV--and he hoped to return to the United States happy and healthy. Indeed Henry looked happy and healthy. He was still smiling, and he showed none of the common symptoms of AIDS.

As he walked away, I reminded myself of how deceptive appearances can be. Henry and his girlfriend had chosen to deny her illness, with tragic consequences. I know that denial can be a normal phase of coping with illness, and I sometimes wonder how I would handle living with the specter of HIV infection. Even after his seizures, hospitalization, and recovery, Henry Pierre clung to his traditional views. Some doctors might say that Henry needed to see a psychiatrist after all.